ALS – Lou Gehrig’s Disease

Amyotrophic Lateral Sclerosis is a neuro-muscular degenerative disease. Since I was very young I was aware of neuro-muscular disease because one on my Mom’s childhood friends suffered from a non terminal disease. Mercedes was a very inspirational woman because even though she had an extremely difficult time walking and talking, she would go to school, take public transportation and was very happy. Only as an adult do I understand how many valuable lessons my Mom taught me about acceptance by making me always see people with disabilities as not a curiosity but something that I should see as normal. Most people with disabilities don’t want special treatment, they want to be looked as people.

I learned about ALS and how it deteriorates a body reading Tuesdays with Morrie back in 2004. I could have never imagined back then that the tears I shed reading that book would come back in the form of having to face that ugly disease by someone close to me having to deal with it. I am not ready to deal with it at all… I am however doing what I can to help my uncle on his journey.

I guess I have my own form of denial going on, because even though I keep on saying that there is nothing I can do about it, I am doing what I can. I will be taking him to his MRI and other tests this week, I am going with him to one of the best guys on the field, and I plan to being next to him every step of the way.

My wife is an advocate for diabetes. She lives with type II and does everything she can to help with awareness and spread the message. She is also doing great with dealing with her disease and also shares her journey. I have been wrestling with posting about this. My blog over the years has been about many things and not one thing at a time. I do want to become more vocal and make a difference when it comes to helping others with this disease. I want to use my experience with translation and interpreting in the medical field to do so… I want to give hope where there is sometimes so little.

I was very aware that one of the side-effects of “growing up” was having to deal with death and loss. There is also the weddings and births that make your life so happy, but dealing with loss feels unfair in so many levels. On my post when I read Tuesdays with Morrie the first time I wrote

“I am afraid of getting old, death is not really my biggest fear but more like not being able to take care of myself later in life.”

Having to see my uncle go through that same struggle that seemed terrifying is my head tears me apart inside.

It is hard to think of other things at the moment, so many other things seem trivial or insignificant when someone you love faces a terminal illness. Writing has always help me sort out my thoughts, and while I don’t plan on making this a journal of my experiences trying to help my uncle, some of it will spill into here. I guess its simply a part of my life, another chapter that I am not quite ready I want to close. Also don’t be surprised if I get completely goofy in the coming weeks, since that is one of my ways of coping, with humor… I never mean it to be disrespectful, again just my way to cope.

2 Responses to ALS – Lou Gehrig’s Disease

I happened to stumble across this blog today and read about your journey with ALS. I work for the Muscular Dystrophy Association in Kansas City. If you ever want to get involved with MDA or learn more about ALS; contact the local office in your area.

MDA funds research grants for ALS every year and we are making great strides in treatments.